Study for Adolescents 12-17 with Moderate to Severe Hemophilia
How Do You Make Decisions About Your/Your Child’s Hemophilia Treatment?
We are exploring how patients with hemophilia and caregivers of children with hemophilia engage in decision-making together with their healthcare team, a process called shared decision-making (SDM).
The research is being done by the research team Sprout Health Solutions on behalf of Hoffmann-La Roche Limited.
What Does the Study Involve?
You will be asked to participate in a conversation with your peers (a focus group) and/or a one-on-one interview.
Conversations will explore what impacts your shared decision-making and possible tools that support your conversations with your healthcare team. You will receive $75/hr compensation for your time.
Who is Eligible?
- Adolescents (12-17 years) diagnosed with moderately severe or severe hemophilia A or B, without current FVIII inhibitors and currently receiving prophylaxis or on-demand treatment OR
- Can speak fluently in English
Time Commitment
The time commitment for patients/caregivers is a 60-90 minute focus group. You may potentially be invited to a 60 minute interview as well.
Please note, adolescents eligible for the study are required to have consent from their caregiver prior to participation. For Quebec participants only adults are eligible for the study.
If interested, please contact SDMstudy@sprout-hs.com